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Masto News

Rowena and Lester’s Story

My son Lester (10 months) was diagnosed with CM/UP [cutaneous mastocytosis/urticaria pigmentosa] when he was 3 months old. He was born with only 2 blisters but over the weeks he developed many, many spots. He is pretty much covered from head to toe. The spots on his face are flat and less red so some

Iris’s Story

I was diagnosed with Urticaria Pigmentosa in 1983 and things remained calm for most of the time except if I was in the sun, or having a hot shower. I was covered in Pigment marks on most of my body and limbs but not my face. This was till around 8 years ago and things

Alana and son Jay’s story

Jay is 22 months old and was diagnosed with Urticaria Pigmentosa when he was about 13 months old, although he has suffered with it from when he was a few days old. He has a rash all over his torso and legs most of the time and suffers from stomach cramps and loose stools.

Patient Support

We provide support to patients and encourage patients to provide support to each other.

Web Forums

This website is the hub through which patients can gain knowledge, receive emotional support and feel connected to others who share similar challenges. Our members have access to our web forums where they can share experiences with others. If you are a patient or a parent of a patient, join today!

Information brochures

You can download our information brochure and cards that help parents and young patients explain the challenges of mast cell diseases. You can also request hard copies of these brochures be mailed to you by emailing us.

Conference

We hold a patient conference every other year, at which members have the opportunity to hear from leading doctors working on mast cell diseases from the UK and from abroad. In the off years we hold a smaller patient gathering as part of our annual general meeting, which may also include a presentation by mast cell disease practitioner.

At our December 2017 annual general meeting in London, Dr Theoharis Theoharides spoke about his research into mast cell diseases. Click here to watch his presentation.

1 on 1 support

Our support team can provide telephone support to new patients and their families or to those facing a change in symptoms or health status. Email us to set up a call.

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